This mom with ALS hopes a groundbreaking UCI clinical trial will let her see her 2 kids grow up

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Lisa Wittenberg, 46, of Trabuco Canyon embraces Dr. Namita Goyal after an office visit with the neurologist. Wittenberg was diagnosed with ALS in August 2017. Also known as Lou Gehrig disease, it has no known cure. Wittenberg is one of 200 nationwide participants in an experimental six-month program that she hopes will stop or slow down her muscle deterioration. “Hope is a powerful thing,” she said.(Photo by Mindy Schauer, Orange County Register/SCNG)

Despite Lisa Wittenberg’s upbeat attitude and sense of humor, she breaks down in Dr. Namita Goyal’s office when talking about her children. Goyal recently diagnosed Wittenberg with ALS, a disease for which there is no cure. Wittenberg is one of 200 nationwide participants in an experimental six-month program that she hopes will stop or slow down her muscle deterioration. “Hope is a powerful thing,” she said. (Photo by Mindy Schauer, Orange County Register/SCNG)

Lisa and Joel Wittenberg say goodbye as they leave Lisa’s doctor’s office in Orange on Monday, April 2, 2018. (Photo by Mindy Schauer, Orange County Register/SCNG)

Lisa and Joel Wittenberg with their children Tommy, 16, left, and Andrew, 13, hold a family portrait taken three years ago. Lisa was diagnosed with ALS in August 2017 and is now confined to a wheelchair. She is hopeful that the six-month experimental medical trial she is in will help slow down or stop the disease’s progression.(Photo by Mindy Schauer, Orange County Register/SCNG)

Lisa Wittenberg says Penny, her lab mix, knows she’s sick and doesn’t leave her side. Wittenberg was diagnosed in August 2017 with ALS, a nervous system disease that weakens the muscles. She is now confined to a wheelchair. “This is totally not me,” she says of being in a wheelchair. Just last January she hiked, sledded and did boot camp workouts 4-5 days a week. (Photo by Mindy Schauer, Orange County Register/SCNG)

A picture of Lisa and Joel Wittenberg clockwise from left, with Lisa’s cousin Carey Aimone, her sons Andrew and Tommy, and her nephew Cole taken two years ago. Lisa is now confined to a wheelchair after being diagnosed with ALS in August 2017. (Photo by Mindy Schauer, Orange County Register/SCNG)

A photo taken three years ago of Lisa and Joel Wittenberg with their sons Tommy, left, and Andrew.(Photo Courtesy of the Wittenberg family)

Lisa Wittenberg holds a family photo album showing off pictures of herself doing things she loved — hiking, being at the beach, hanging out with friends and family and living an active life. Wittenberg was diagnosed in August 2017 with ALS, a nervous system disease that weakens the muscles and is now confined to a wheelchair. “This is totally not me,” she says. (Photo by Mindy Schauer, Orange County Register/SCNG)

A a picture of Lisa and Joel Wittenberg more than a year ago, before she was diagnosed with ALS. (Photo Courtesy of the Wittenberg family)

Lisa Wittenberg says her “free fall” began about two years ago — in boot camp, with a box jump.

She did that jump just as she had a hundred times before.

Stood with her feet shoulder-width apart. Dropped into a quarter squat. Extended her hips, swung her arms, and pushed her feet through the floor to propel herself onto the box.

She felt a tiny tug in her lower back.

“It felt like a pulled or torn muscle,” she said.

The pain returned when Wittenberg did sprints or jumping jacks, or really, any high-impact activity.

Seven months of physical therapy didn’t seem to help. So, in September 2016, she stopped working out. She figured that would give her spine time to heal.

Her back got better. But, about three months later, on a trip to the LA Coliseum to catch a Rams game with her family, Wittenberg noticed she couldn’t move her right ankle up and down. Suddenly, she was walking with a limp.

In March 2017, the fingers of her right arm hurt and appeared deformed. It was carpal tunnel, her doctor said.

The following month, Wittenberg had spinal surgery, and seemed to be recovering well.

But soon after, in June, she fell on her physical therapist’s driveway, breaking her right leg. Her therapist sensed something was wrong.

A battery of tests and doctor visits followed. Finally, in August, the 46-year-old mother of two from Trabuco Canyon learned that this free fall wasn’t just some random mishmash of unfortunate events.

She had Amyotrophic lateral sclerosis — ALS or Lou Gehrig’s Disease — a disorder of the nervous system that affects nerve cells and voluntary muscle movement.

The free fall continued after her diagnosis.

One day, she struggled to climb the stairs. Then, she had trouble buttoning her shirt. A month later, she needed a walker to get around.

December, she stopped walking. January, she couldn’t drive.

The woman who went sledding in the mountains, nailed box jumps and burpees in boot camp, and enjoyed long drives along the coast with Billy Idol songs blaring from her stereo, was now unable to move.

Confined to a wheelchair. Given two to five years to live.

Desperation

Dr. Namita Goyal keeps a box of tissues in her exam room. And it’s not just for her patients or visitors.

The UCI Health neurologist and ALS specialist who delivered the devastating news to the Wittenbergs in August tends to get emotional with her patients.

Despite Lisa Wittenberg’s upbeat attitude and sense of humor, she breaks down in Dr. Namita Goyal’s office when talking about her children. Goyal recently diagnosed Wittenberg with ALS, a disease for which there is no cure. Wittenberg is one of 200 nationwide participants in an experimental six-month program that she hopes will stop or slow down her muscle deterioration. “Hope is a powerful thing,” she said. (Photo by Mindy Schauer, Orange County Register/SCNG)

It’s not easy for a doctor to tell patients they’re going to continue to gradually lose their muscle function — the ability to speak, swallow, or breathe. Or that they might have just a few years left.

“The thing with ALS is, you feel helpless,” she said. “There’s no cure and no way to make it stop or slow down.”

ALS is a group of rare, neurological diseases that damage nerve cells that control voluntary muscle movement. The disease is “progressive,” which means the symptoms get worse over time, as Wittenberg experienced with her free fall.

With this disorder, nerve cells originating in the spinal cord degenerate or die. They stop sending messages to the muscles, which gradually weaken because they are not able to function.

About 10 percent of ALS patients survive for 10 or more years. Physicist Stephen Hawking survived for more than 30 years after he was diagnosed because he had the means to be on a ventilator. But Hawking was also an outlier, not the norm.

Most ALS patients die from respiratory failure usually within three to five years from when the symptoms first appear. That is the segment researchers like Goyal are passionate about helping.

And it was this passion for ALS research that brought the neurologist from Harvard Medical School to UC Irvine Health’s ALS and Neuromuscular Center in Orange.

A sliver of hope

While Goyal broke the bad news to the Wittenbergs, she was able offer a thin sliver of hope.

She told the couple about Brainstorm, a new clinical trial researchers hope will slow down disease progression for ALS patients, reduce symptoms and possibly give them a few more years to live.

The treatment involves extracting patients’ stem cells and treating those cells with NurOwn, an experimental cell therapy. The treated stem cells would then be injected back into the patient’s body.

Each patient would get three injections over 28 weeks. Goyal is a lead researcher at UC Irvine on this clinical trial, which is being carried out at six trial centers nationwide on 200 patients.

Wittenberg met all the criteria for this experimental treatment. She is under 60, has had symptoms for less than two years and she can breathe on her own without a ventilator.

Lisa Wittenberg says Penny, her lab mix, knows she’s sick and doesn’t leave her side. Wittenberg was diagnosed in August 2017 with ALS, a nervous system disease that weakens the muscles. She is now confined to a wheelchair. “This is totally not me,” she says of being in a wheelchair. Just last January she hiked, sledded and did boot camp workouts 4-5 days a week. (Photo by Mindy Schauer, Orange County Register/SCNG)

But here’s the catch. This is a “random double-blind, placebo-controlled clinical trial,” which means half of the patients will not get the actual treatment, but a placebo — a substance that would have no therapeutic effect.

Neither Goyal nor Wittenberg will know until after the study ends in July 2019, whether she got the treatment or the placebo.

But stark realities are hard to escape at home, no matter which way the Wittenbergs turn.

They’ve already installed a wheelchair ramp and are remodeling their first floor so Wittenberg can have a more comfortable bedroom and bathroom downstairs. This week, they traded in her husband’s pickup truck for a wheelchair van.

Wittenberg’s husband, Joel, a history teacher and golf coach at Trabuco Hills High School, is now also a caregiver.

Lisa and Joel Wittenberg say goodbye as they leave Lisa’s doctor’s office in Orange on Monday, April 2, 2018. (Photo by Mindy Schauer, Orange County Register/SCNG)

“When you are faced with something like this, you just do what needs to be done,” he said. “You don’t ask questions, you don’t stop to feel sorry for yourself. Failure is not an option.”

He says his wife’s smiling face and her delightful sense of humor, has helped. Family members and friends have pitched in, too.

They’re taking turns to pick up and drop off the kids at schools. They are bringing hot meals. And they are caring for Wittenberg when her husband has to be at work.

“I’m as strong as I am because of this amazing support system I have,” Wittenberg said.

But she misses being independent. When she talks about the things she can’t do any more, she struggles to keep it together.

“I miss going upstairs. I miss driving up and down the coast with my windows and moon roof open. I miss going to concerts.”

For Tommy’s 14th birthday, she took him to his first concert, Imagine Dragons.

She misses those little things. Like going to Target and bumping into her friends. Or going out to dinner with her husband.

“I’m a total beach girl,” she says, running her fingers across a photo of her standing on the beach, making a heart with her hands around the setting sun.

“Sunset on the beach with my boys, that’s me in a nutshell.”

The wait begins

Now, there is little left to do, but wait.

Goyal says there is reason to be hopeful. This is one of the few ALS clinical trials that has made it to Phase 3, which means it has already been proven safe and effective. The next step is review and approval by the Food and Drug Administration, which would make the treatment available to everyone.

“It’s been one of the most encouraging trials that we’ve ever seen,” said Goyal, who has done ALS research for a decade. “A majority of trials have stopped at the second phase, which means they were not effective.”

When it comes to ALS drugs, effectiveness is not about making the patient walk or regain other functions. It’s about stopping that free fall Wittenberg has been experiencing over the last year and a half.

Lisa Wittenberg holds a family photo album showing off pictures of herself doing things she loved — hiking, being at the beach, hanging out with friends and family and living an active life. Wittenberg was diagnosed in August 2017 with ALS, a nervous system disease that weakens the muscles and is now confined to a wheelchair. “This is totally not me,” she says. (Photo by Mindy Schauer, Orange County Register/SCNG)

Within a month, some patients have seen minor changes. During a recent appointment with Goyal, Wittenberg said she could kick her right foot, something she couldn’t do before she got the injection.

“That is a hopeful sign,” Goyal said. “And for these patients, hope is empowering. Even a placebo effect can prove meaningful in their journey.”

If the drug is successful in stalling the disease, that would be “a remarkable victory,” Goyal said.

“It means we’ve bought these patients some time.”

And that’s all Wittenberg wants.

“I want to see Andrew graduate from high school,” she said, breaking down in tears. “Two to five years is not enough. I have to be around for my kids.”

When this trial ends, Wittenberg said she will line up for the next one.

“I do believe with all my heart that there will be a treatment that’ll help me,” she said.

Out of 98,000 people who contacted Brainstorm worldwide, only a small number have qualified, and Wittenberg is one of them.

If she can get 10 years instead of five, Wittenberg says, she’ll take it.

“I don’t want to walk, I don’t want to drive,” she says. “I just want to make this stop.”

This is the first story in an occasional series that will follow Lisa Wittenberg as she participates in an ALS clinical trial at UCI Health.

About the clinical trial

Brainstorm is still looking for ALS patients who might qualify for this clinical trial, which is expected to end in July 2019. Information: 949-824-3990, email stemcell@uci.edu or visit brainstorm-cell.com.

Deepa Bharath covers religion for The Orange County Register and the Southern California Newspaper Group. Her work is focused on how religion, race and ethnicity shape our understanding of what it is to be American and how religion in particular helps influence public policies, laws and a region's culture. Deepa also writes about race, cultures and social justice issues. She has covered a number of other beats ranging from city government to breaking news for the Register since May 2006. She has received fellowships from the International Women's Media Foundation and the International Center for Journalists to report stories about reconciliation, counter-extremism and peace-building efforts around the world. When she is not working, she loves listening to Indian classical music and traveling with her husband and son.